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My History

4 posts in this topic

In my life, I suddenly quit walking September 2004. I was a fibromyalgic since 1989. After this life changing event in 2004, I quickly had many other body changes. I had some mental changes also, but for the sake of time here, I will stay with the physical changes. Yes, depression was there, due to wondering why this event was taking place. I am 54 right now and I am too young for this, right? lol...

Okay, on with this journey. I did not have any insurance at the time when I almost stopped walking. I could walk about 1-2 blocks at times, but mainly 1 block. If I could walk 1 block, the question was, could I make it back? Oh, the pain of it all. It started in the hips so quickly, down the calves, to the ankles and on to the feet, including my toes!!! At times, after getting out of the bed, I was not able to move across the floor and if I could at times move across the floor, I had to use a cane, stay close to the walls, or walk and then stop, waiting for whatever it was to change, so that I could walk some more.

I had insomnia big time. The pain was always on 10 alert. I was home bound, vertigo-4 mths in bed, headaches, sudden neck, shoulders, clavicle pain, occipital pain, scalp pain, I had a facial mak of numbness, my spine had 8 bulging disc all of the sudden, 1 disc was now tearing, great abdominal pain, diahrrea daily and then always tearing on the anus (fissures they say) many infections, many teeth pulled due to sudden changes in dental aspects, all my muscles hurt, trigeminal neuralgia, vision changes, walking has stayed the same since onset in 2004 and all of the other symptoms and conditions are coming ang going.

Now get this, since I had no insurance, my MD would not get involved as one would hope a doctor would, but he blamed that all of this was FIBROMYALGIA. Then the first NEUROLOGIST took her nerve conduction test and claimed TN for facial mask of numbness, but also had some bulging disc maybe. I had the MRI findings. I had the MRI for my neck, left shoulder and lower back. I had the bone density test. I have had a spinal tap. I have had blood testings. I have been on antibiotics. I have just had the GOLD STANDARD TEST, small bowel biopsy, which showed ATROPHIC MUCOSA IN Duodenal AND THE BIOPSY WAS TAKEN. I am waiting for the biopsy results.

Threshold of pain is 8-10 always.

I have a huge list of medications. Some stay and some I get rid of.

I have had Trigger Point Injections by my primary doctor. I wonder if he/or nurse shot me wrong?

I have the Pain Specialist involved in my life. I had some epidural shots to lower back and some pain relief, but it is back and pain is not that intense.

The second Neurologist had me use B12 Shots for 7-8 months, along with Folic Acid pills.

The Gastroenterologist doctor did the Colonscopy, all is okay up inside that way.


I am with another primary doctor at this clinic...watching him very closely on what he does with me.

I have applied for disability of course. I was a caregiver in 2003 and quit working.

Back to the point of NO INSURANCE. I finally got insurance by July 2005. This primary, before I had insurance, would insult me, keep me in bondage to his office only, no referrals, main objective was to get me to quit smoking. I racked up $2,000.00 to this clinic for them to do nothing for me. When I told this doctor, please get me help, he would say to me, "What makes you think, or feel it is that or this?" Hey, he was doing nothing, I had to suggest to him what it can be, or is and for him to get me help. He took only 1 blood test and it showed him nothing and I asked to be seen by more specialist and he told me none of them want, or need to see me!!! Imagine that? I had a huge medication bill. My life was in his hands. I had huge Hospital bills.

One day, after sharing with someone about this, he suggested that I see the Ear, Nose and Throat doctor. And this is where my life changed a bit. I had a Brain MRI, no MS and anything else in there, Praise God.

Next, this ENT doctor referred me to the new Neurologist. After many months of Physical Rehab, B12 Shots, Folic Acid, I graduated. He took the blood test for Celiac Sprue and there is was, a possible reason to my hell. Next, I turned that over to the Gastro doctor and I told you guys what he did recently. Waiting for those results.

Oh ya, I got this, the Dermatitis Herpetiformis. My doctor also said to me that I had Staph Infection. There was a huge sore on my stomach, he cut it open, never did a culture and he never told me what it was. I had to go to the clinic, every 3 days and pack that sore. man, has anyone had anything like this with their doctors?

I am still having my daily diahrrea, tearing on the anus and injections of Lidocaine daily for the pain down there. I am on 4 ANTISPASMOTICS for the diahrrea. I live on Percates. I have some muscle relaxers at times. I use a headache pill, but nothing for sleeping as of yet. I had my eyes tested at the hospital, brain waves and that was fine.

There is more to this story, stay tuned.



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Wow! You've been through a lot. There are others here with stories like yours, unfortunately it's all too common! I myself was not diagnosed until I was 43.

Was your rash confirmed to be DH? The reason I'm wondering is that IS a diagnosis of celiac and no further tests are needed to see if you have it.

I am assuming your blood tests came out positive ... I would get off gluten 100% immediately based on the blood tests alone. Not all damage is reversible, so you want to stop eating gluten so that you don't have any more irreversible damage (not that you do have irreversible damage). I have seen many people around here have miraculous changes in their lives. Please keep us posted on your progress as I anticipate you being one of those people.

Be sure you're getting lots of rest and eating healthy foods. Your body will need a lot of energy to heal itself. Also read up on how to get gluten-free, it's not as easy as it sounds on the surface. We're here to answer questions, so feel free to ask away!


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As Carla said if you have DH then you are Celiac. Not all celiac's get it but only celiacs get it. Welcome to the forum. I know of another person whose major back problems and his only symptom was the cause of this disease.


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You have been through a lot. Like CarlaB I'm assuming your tests for Celiac were positive or do you not have those results?

You may also want to get tested for food allergies as the symptoms can often be similar as both can cause malabsorbtion which is the actual culprit of a lot of the symptoms.

I'm sorry to hear of your struggle with doctors. I learned long ago to fire doctors that weren't cooperative, and have found that doing my own research into conditions has brought me more help than trusting the doctor to come up with things. Honestly I've come to the point of only using doctors as sounding boards, for their signature on tests I want done, and signature on medications I need.

I "listen" to what they say about the results, but then I come home and research it myself.


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    • I understand. Poor thing, made doubly rough because 13 is a really hard age even in the best of times. OK, at 13 she should show the damage in the biopsies. I didn't know if she was 2 or 3 yrs. old & in those cases sometimes they just plain haven't lived long enough to be damaged where the biopsies pick it up - it can be so patchy then.  Gosh, I'm really feeling for her & you both and I so want to say take her off gluten the moment the endoscopy is over but I'm afraid to say that b/c I've seen some pretty weird things go on that you would never expect. Docs can be so uninformed! Please let us know how things turn out & send your daughter some hugs from me and tell her I believe her. Please let her know that most of us had been told by doctors they think it's all in our heads, didn't believe us, blew us off so we know exactly how she feels. Remind her her pedi believes her & he's been more helpful than the GI has.  Press the GI for 6-8 biopsies but a bare minimum of 6.  {{{{{{{{{{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}
    • I have seen articles linking celiac to Barretts and esophagitis.  I've actually been subtly hinting to my boyfriend to get tested for celiac as well because he has some strange Autoimmune arthritis as well as Barrett's  and some white spots on brain MRI Not MS). One of the articles I read on Celiac and Barrett's actually suggested that most of the patient did not have actual acid reflux symptoms. Not sure if you ever did antibody testing for celiac, but sounds like you certainly want to avoid gluten. 
    • Ahh good point! She is 13 and has been miserable for over two years. It started with chronic hives. We have been to a dermatologist, and a allergist and they brushed it off to her seasonal allergies and now she has joint pain,bloating,constipation,fatigue,headaches just all around miserable. I just want answers quick. she is getting depressed and says she hates her life cause she doesn't think anyone believes her. It's heart breaking . I hope we get answer soon. Thanks for the advice I will keep her on gluten. She is just miserable and I figured the sooner she is off gluten the sooner she will feel better. 
    • Welllllllll, in this particular case it would be best to keep her on gluten until the results come back. The reason I say this is b/c this GI seems whacky. There's a chance you may need to go to a different GI & have the endoscopy redone. I was going to say get a new GI but since the endoscopy is on Monday then I would go forth with it rather than waiting the time it would take to get a new GI & schedule an endoscopy. This GI seems set that it's not celiac & when they get that in their brain it's usually pretty darn hard for them to admit they were wrong. My concern is that she won't take enough biopsies from the right places b/c she's either dumb about how many & where or letting her personal (already formed) opinion influence what she will do. The problem is that you can't be there in the OR with them standing on the GI's shoulders making her do the right thing. Not knowing your daughters age, the other concern is that there may not be "enough" damage just yet, it may be patchy, etc..... that with the mindset this doc has, she will poo poo the dx.  Let me say that it would be a travesty & wholly awful IF you had to put your daughter through another endoscopy but we know how very important it is for her to have an official, dyed in the wool dx. So I'm just trying to think down the line & prevent problems before they come up. I mean, this doc may not even take any biopsies. That sounds insane I realize, but really, it happens more often than you would think. I can't tell you the number of times we've had people come on here after having an endoscopy for celiac where the doc didn't take any biopsies b/c the doc is so stupid as to think they can see the damage & doesn't realize there MUST be biopsies! If you take her off gluten & heaven forbid, you have to end up putting her back on it to get further testing then chances are she's going to get much, much sicker when she's put back on gluten. That most often happens with us and I'm talking about radically sick. See, I'm basing all my thinking on the fact that despite ALL the positive celiac blood work, this dimwit doc doesn't think it's celiac & instead it's all related to the constipation. That is just so far out there, it's NUTS! She's flying in the face of hard evidence! Every test you listed was positive. I can't even begin to understand how this GI comes to her insane conclusion. THAT'S why I am so concerned. 
    • Thanks for your reply. That's what my husband and I thought too. She has a ton of symptoms that's fit celiac. Also I was going to start her gluten free diet after her biopsy on Monday cause the dr said the results take two weeks. Is there a reason I should keep her eating gluten until we get the results? Thanks for your help.
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